Wednesday, November 11, 2009

Houston Update for 11/11/09

Since I spoke with you last, we have had time for relaxation and some good food. Matthew continued to feel well through Saturday but had tough days on Sunday and Monday. He improved a bit on Tuesday.

Monday was our biggest challenge so far in Houston. We visited MD Anderson for the first time. It is an enormous cancer facility with many facets set up to serve people from all over the world. And they were there - MANY people - from all over the WORLD.

We didn't have any problem finding our doctor's location and actually arrived early (at 12:15 pm). Then the waiting began. We finally saw the administrative person to sign legal papers, etc. Then waited until 3:00 before we finally saw the doctor.

Our visit with him was a bit overwhelming and frustrating since he and his staff were not totally versed on Matthew's case. Plus we began hearing suggestions of things we have been told "no" to from day one. Unfortunately, with the experience of the past 3 years we have become pretty adept at handling these situations but were caught off guard at this meeting.

We ultimately left the facility shortly before 6 pm needing to eat and exhausted emotionally and physically. After pizza, a movie and a good night's sleep we were able to sort through what we had heard at MDA on Monday. Basically, for the rest of the week, Matthew will be meeting with several doctors, have some tests and ultimately meet with the same doctor again Friday afternoon for the "ultimate plan" presentation. Tuesday was a much calmer and more informative day at MDA.

Today (Wed) we have "off" from appts and plan to enjoy the area, maybe finding a good "Tex Mex" place to eat.We expect to hear from Burzynski Clinic today or tomorrow to set up an appt for their "plan presentation". How thankful we are for "options" when we thought there were none!